Being ill during the coronavirus pandemic

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Suz Atlas

Peter Morley took it personally when Donald Trump announced he was commandeering the lupus drug Morley has taken for years as a possible treatment for the coronavirus pandemic. Morley’s life was now at stake from more than COVID-19. Morley was facing his lifelong battle with lupus, possibly without the 200mgs of hydroxychloroquine he takes twice a day to help mitigate the life-threatening symptoms that have hospitalized him in the past.

Peter Morley and Sen. Bob Casey

Lupus is an autoimmune disease in which the body’s immune system becomes hyperactive and attacks normal, healthy tissue. Symptoms include inflammation, swelling and damage to the joints, skin, kidneys, blood, heart and lungs. Trump began touting hydroxychloroquine as a potentially “game-changing” treatment for COVID-19 during his press briefings in March. But early studies have shown little efficacy against the virus, while also highlighting significant side effects.

Morley is a well-known face on Capitol Hill and has had his run-ins with Trump before. A healthcare activist and patient advocate, he has battled to save the Affordable Care Act and push other healthcare legislation. Morley has testified before Congress many times, speaking to various committees — Oversight, Appropriations, Energy and Commerce. 

A fighter for the lives of others, now Morley is fighting for his own life as well. “I can end up in the hospital — the last place I need to be, especially as someone who is immunocompromised,” he said. His supply of hydroxychloroquine, usually prescribed in a 90-day supply, was reduced to 30 days after Trump said the government was stockpiling the medication. His current prescription will run out in a matter of days. Will he be able to get more? He doesn’t know.

Morley has addressed HHS Secretary Azar and Seema Verma, who heads the Centers for Medicare and Medicaid Services. “I’m a patient with lupus. The stress of worrying about access to my medication, upon the stress of COVID-19 has been torturous.”

Morley said, “It’s not like I’m afraid of death, but I don’t want to hasten that process.”

Before the coronavirus pandemic struck the U.S. in January, 131 million Americans were sick with some form of chronic illness, from autoimmune diseases like lupus, HIV, rheumatoid arthritis and multiple sclerosis to asthma, diabetes and cancer, according to the Centers for Disease Control (CDC). The CDC has noted that people with such underlying conditions are at high risk for worst-case scenarios with COVID-19. The coronavirus attacks the lungs and can cause life-threatening pneumonia. But new findings suggest it also impacts the circulatory system and the heart, putting patients like Morley and millions of others with chronic illnesses at risk.

Suz Atlas has survived cancer before, but her current battle with a rare and aggressive cancer, urothelial carcinoma, has been tough. Yet she celebrated another birthday on Earth Day and is determined that it won’t be her last.

“Cancer is a pandemic,” she said bluntly. “It’s the pandemic before the COVID-19 pandemic that we just don’t talk about. But millions of us have it; it’s a tremendous threat.” She notes that it is every bit as insidious and unseen as the coronavirus and is running parallel to COVID-19 for many. An estimated 20 million Americans currently have some form of the disease.

Atlas lives with her partner of 25 years at the John C. Anderson apartment complex for LGBT seniors. The pandemic has kept her housebound. She said a case of COVID-19 could strafe the building. “It’s like a nursing home without the staff,” she said and described how the residents try to keep their distance from each other in halls and common areas.

The pandemic has put Atlas’ treatment on hold. “March 13 was my last chemo,” she explained. She doesn’t have another appointment until May 22.

“I’m feeling better physically,” she said, because she’s not in treatment at the moment. “But it’s very stressful.”

She said she asked her oncologist, “Which is going to kill me first, cancer or corona? When I let myself think about it, I’m terrified.”

That March 13 date — when Gov. Tom Wolf put Pennsylvania on shutdown — impacted Alma Diaz as well. Her situation highlights a whole other aspect of how the pandemic has impacted healthcare, particularly for LGBTQ people who are already at high risk for COVID-19, according to the CDC.

The results of a preliminary colon cancer screening test Diaz had in February came back positive. Diaz’s doctor scheduled a diagnostic colonoscopy for March 20, during spring break at the university where Diaz teaches. Diaz had met with the gastroenterologist to go over the details of the surgical procedure.

But the coronavirus shutdown changed everything. “Suddenly, the surgical procedure I was told I had to have right away was ‘elective,'” she said. The hospital called her to cancel and told her they were not rescheduling “for the time being.”

Over a month later and Diaz said, “You try not to think about it — if you are losing precious treatment time, if while everyone is focused on this one disease, you might have cancer, and it might be spreading.”

For Morley, the pandemic has also meant reduced access to care by shifting to telehealth appointments. “My rheumatologist can’t touch my knees,” he said. “How are you going to aspirate them over the phone?”

Morley also worries about what might happen if his partner, an essential worker, comes down with the virus. “He’s my primary caregiver,” Morley noted. “And he is out there helping others every day; his life is at risk.”

Atlas said the pandemic has forced uncomfortable conversations between her and her partner about what would happen if one of them gets COVID-19. “We say, what if you get it, what if I get it. Mary and I always figured we would go off the cliff together. I always knew one of us would be there fighting for the other. They don’t allow that now. People are dying lonely deaths.”

Atlas added, “Life is on pause for many of us right now. It’s a tough time to be sick, but you can’t go sit in a corner and suck your thumb. You go on and hope you come out on the other side, still alive, with all the people you love still there, too.”

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